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Update on the Beam GSD1a programme.

Update on the Beam GSD1a programme.

Beam Therapeutics have put out a press release that includes an update on U.S. Food and Drug Administration clearance for their investigational new drug application for BEAM-301 in GSDIa.

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Virtual AGSD-UK support.

Virtual AGSD-UK support.

Virtual Groups As children are returning to school, AGSD-UK will be holding a virtual group for parents or carers who might have questions around SEN, anxiety, or behaviour. If you would like to attend on the 9th September at 7.30pm please email info@agsd.org.uk....

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Update on phase 3 study of DTX401.

Update on phase 3 study of DTX401.

Ultragenyx have provided the following community update on the phase 3 study of DTX401, their investigational gene therapy for the potential treatment of GSDIa. GSD1a Community Update

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Rare Disease Day 2024.

Rare Disease Day 2024.

Today is Rare Disease Day! This rarest of days, 29th February is a great opportunity to raise awareness about rare conditions. Visit https://www.rarediseaseday.org/ to find out more about how to get involved in this international campaign. Thanks go to all our...

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If you have a GSD news story message us or see Notes for contributors.

Read some personal stories

Do you have an interesting personal story to tell? Just message us or visit the Notes for contributors.

For personal stories on an individual GSD, visit the page for that GSD.

What and who we are

  • National support group for those affected by Glycogen Storage Disease (GSD) and their families.
  • Membership based with an elected board of trustees.
  • A company limited by guarantee and a registered charity.
  • Collaborators with UK rare disease and international GSD groups.

Keep in touch

Register FREE with AGSD-UK to keep in touch with the latest developments and future conferences, workshops, courses and fundraising events. It helps you keep in touch with other patients and families. You will receive our magazine, Glisten, by email.